Our little girl just continues to amaze us. She made it another 8 weeks between her IVIg infusion. We are happy to report that she is now 82.5cm tall, which might not sound like much, but for a girl who was stuck at 80cm for 6 months, this is big news.
We are still just blown away by the positive effects of an every other day steroid dosage. She is looking tall and thin. Her adorable "cheeks" are really starting to go away and she looks so grown up. Where did our baby go?!
Dr. Effinger is super happy with her progress and shared that we are nearing the end of the Clinical Trial. Next month we will again reduce her prednisone dosage and in September Keira will receive her last scheduled IVIg infusion.
Your first thought is probably - Wow! That is amazing news, however for her two anxious parents we have very mixed emotions. The medication she has been on for the last 10 months has helped suppress those terrible OMS antibodies and gave our little girl back her life. The thought of taking the medicine that made her better away makes us VERY NERVOUS that these antibodies will slowly build up and cause a relapse. :(
On top of that concern, in only a few months it will again be the start of cold/flu season. Catching a minor cold, could trigger her immune system to start up the production of the OMS antibodies and cause a relapse. :( As you can imagine, keeping Keira healthy this next year will be more important than ever.
Thankfully, we have family and friends who are nothing but supportive, a team of doctors that love our little girl and only want the best for her, and a determined 27 month year old who wants to do everything by herself. We truly are blessed and will continue to do everything we can to make sure that Keira stays as healthy and happy as possible.